01 Nov 2017
It is the season of the unexpected.
Last night, Halloween brought a host of unexpected guests to our front door. It was an opportunity to meet neighbours we don’t normally speak to under the guise of passing on tooth decay to the next generation. Pots of treats sat in the porch ready to be dished out, hoping to warn off any unwanted tricks. It’s the one time of year we encourage children to knock on a stranger’s door and take sweets from them.
By the end of the week, small cardboard packages will turn into unexpected displays of light against a dark sky. An unassuming flame magically ignites a small paper rocket which shoots swirls and spirals of coloured delight while our necks crane to watch. The florid colours will cause ‘Ooohs’ and ‘Aaaah’ from every generation (unless you’re a dog, or child who hates bangs!).
Being the parent of a child with additional needs often marks the beginning of an unexpected journey. Many previously held hopes and dreams must be set to one side or adapted. We are faced with loving the daughter we have, not the one we expected. It isn’t a difficult task – loving. Especially not with our incredible, beautiful children. But uninvited pain can sweep at unpredictable times.
The trick is to ride the waves.
As a parent, our own journey is marked by milestones of acceptance. Many have written about this unexpected journey. The well-known poem ‘Welcome to Holland’ by Emily Perl Kingsley likens our unique parenting to a planned trip to Italy that ends in Holland. It just isn’t the same. We can feel pained at losing all the intoxicating Italian beauty we expected or we can look for all the beauty Holland has to offer.
More recently, a Facebook post by Shana L Anderson drew out the heart and soul that lies behind being the parent of a child with disabilities. It describes how our version of parenting can be a lot like a shopping trip to Ikea. The massive bright blue and yellow signage beckons us into an unplanned shopping experience. What you go in for, is rarely what you come out with.
The treats are not what we expect
Only Ikea is able to turn an expedition to buy bedroom furniture into a three-hour wander. Browsing aisles and filling a trolley with tea lights and rugs you didn’t know you needed before devouring the best gravy and meatballs ever.
My own memoir is titled The Skies I’m Under. Because finding myself in a story much bigger than myself was all about learning to love the skies above me, rather than what I had expected.
It’s about letting go of the planned and finding treasure in the unexpected.
Part of our unexpected journey includes equipment
Equipment we didn’t even know existed, never mind longed for.
Decorating the nursery was not originally focused on visual stimulation or space for physiotherapy. We hadn’t banked on needing walkers, standers, frames or AAC. But alongside the beds, dining table and cabinets comfortably sit specialist seats and sleep systems. As parents, we become fluent in a medicalised, foreign language and regularly receive letters in this alien tongue.
Unexpected professionals become household names and bring with them large, bland boxes. These oversized packages contain a new kind of hope. Hope that improvements, no matter how small, will occur.
Hope that development will come, muscle tightening delayed or distortion corrected. And from the unassuming box of tricks comes seemingly simple things. But simple things, like lights against a dark sky, can brighten our life and have us unexpectedly ‘ooohing’ and ‘aaaahing’ with delight.
Sometimes, Simple Stuff really does work
So, why make it complicated? Life is challenging enough and full of the unexpected. As the popular Simple Stuff Works animation concluded,
“I didn’t expect to be a resident of Number 24 – no-one does.
I hadn’t planned on learning about medications, therapies and postural care.
But, I take the information I’m given, along with the challenges of real life and do the best I can.
Because as a parent, I can make a difference to my son’s future quality of life.”
Rachel is a nurse, author and mum living in Essex with her husband and three sons. Her life changed the day her eldest son was born and introduced her to the world of severe disability and life-limiting epilepsy. As well as doing laundry and picking up Lego, she blogs at Born at the Right Time and published her memoir ‘The Skies I’m Under’. Rachel is passionate about sharing her family’s story to improve the care of complex families. Her speaking engagements include leading workshops with parents as well as training professionals.